Nothing upsets parents more than learning that a child has a health-related problem. Parents are nurturing, protective, and want nothing but the best for their children. I believe that they should be. When confronted by illness, parents have many responses, from caution and concern to profound fear, especially if it’s due to something that they don’t really understand. Like epilepsy. Parents can become overprotective when such a child wants to try a new activity, like swimming or riding a bicycle.
I’ve been there, too. When I was a baby, I had seizures. The doctor reassured my parents that I would be fine. But, when I was twelve, I had another one. A pediatric neurologist again reassured us that I would be all right—“if it didn’t happen again.” But it did. My seizures became more frequent; when I was in college, I was having seizures monthly. My epilepsy became harder to live with, but I got used to it—sort of. While I had the good fortune of never being teased, I still did not feel not quite whole. My seizures are still not controlled, but I have an understanding and helpful family.
Advice? First and foremost, parents and children can be reassured by the old saying that “God doesn’t make junk.” I believe that every single person is a unique combination of strengths and weaknesses. Everyone involved, both children and parents, must take “ownership” of the disorder, being continually aware and concerned.
Be frank and honest about just what is going on, what needs to be done, and what should not be done. You need to be cautious, but not overwhelmed. Often your physician or health practitioner can help in setting appropriate limits. This is difficult and perplexing because parents want their children to do as much as possible. Parents and children both want healing. Some people seem to grow out of their seizures; others seem to grow into them. Future uncertainty is challenging!
As parents, what can we do? What to tell our children, their friends, their siblings, their teachers, and other adults (including the parents of their friends)? We need to tell them that it is O.K. for our children to play together. Explain that your child may have a seizure some time, and show them how to handle a seizure. This will lower fear.
I remember being a camp counselor for children with seizures. It was our first night in the cabin: about a dozen boys, ages six to eight, and three counselors. After dinner, we were having “Circle Time,” talking about the events of the day and our plans for tomorrow. I then brought up some specific questions: “What is a seizure?”; “What does it look like?”; “What should you do when someone has one?” Nobody knew; most of the boys had never seen anyone having a seizure.
Suddenly, almost on cue, one boy had a seizure. Holding and protecting him, I sent for the nurse, who came and took him to her office. The group then talked about the seizure: what it was, what to do, and what not to do. They learned a lot that night. One child said he was upset that his parents wanted him to wear a Medic Alert bracelet. When I showed him mine, he felt better.
To educate everyone, we need to know the latest information from organizations like the Epilepsy Foundation of America, from government agencies like NIH, and the child’s physician. There are support groups both for individuals with epilepsy and for parents.
We must ensure that our children also know about their epilepsy, including what they can and cannot do, both now and in the future. It is important to be optimistic; see the glass as half filled, not half empty; look to the future and be hopeful. I believe that this is the only way for us to be.
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